The president of the Canadian Premature Babies Foundation, Katharina Staub, has just had a letter published in the CMAJ. The letter was in response to the article by Dan and Beau Batton, and emphasizes many of the points that they brought up. It seems to be free access http://www.cmaj.ca/content/early/2013/10/28/cmaj.130268.citation/reply#cmaj_el_716559, and I would urge you to read it: the voices of the parents have often been missing form this debate, lets hope that is starting to change.

One point that Katharina makes very strongly is the way these position statements, and their recommendations for counseling, always include a long list of complications, potential impairments, and everything that limits the lives of preterm babies, but no balancing list of ‘what preterm babies and children can do, how they live happy lives and what they bring to their families and communities.’

Talking to parents and only focusing on the negative does not give a balanced view of the situation, and surely we must be balanced.

5 Responses to Parents advocate for equality for preterm infants

We were very lucky to have had relatively positive consultations with our neonatologists, who were cautious in giving us a balanced outline of possible outcomes for our daughter, while remaining as upbeat as possible. Considering our child is a surviving twin born at 25 and 5 who had multiple infections, severe BPD, was intubated for about 6 weeks, required steroids to be extubated, and who suffered moderate cerebellar damage from a bleed, this must have been a challenge.

I agree very much with Katharina Staub that communication needs to be tailored to each individual situation with respect to the medical condition of the baby, and the level and complexity of information desired by the parents. Neonatologists and counselors must have to walk a tightrope every day in their interaction with parents who are literally frenzied with terror and who, at the end of the day, just want someone to tell them that everything is going to be okay. While it might not be the right thing to do, I can see how some medical professionals might feel it is better to err on the side of negativity and have parents who are pleasantly surprised by their child’s development (without strongly considering the anxiety and stress the parents will then have to face on a daily basis) rather than create an overly-rosy projection of a child’s outcome only to leave parents bewildered and angry when their child faces significant physical and developmental issues.

It is the grey area represented by the last four words of the paragraph above – ‘physical and developmental issues’ – that was the greatest challenge for us and represented the only area weakness that we experienced in our interactions with the doctors caring for our baby. In our extensive readings we came across numerous nebulous terms referring to outcome. These include ‘language impairments with lasting effects’, ‘cognitive-developmental disorders’, ‘dysfunction’, ‘unfavourable outcome’, ‘functional and social-behavioural defecits’, and ‘mental and motor impairments’. There are many other examples. The NICHD preemie outcome calculator gives our daughter a 47% chance of dying or having ‘moderate to severe neurodevelopmental impairment’. The issue was, didn’t have much of an idea of what these terms meant. We knew that severe impairments included deafness, blindness, cerebral palsy, and profoundly low IQ, but what about a ‘moderate’ impairment? What is a ‘dysfunction’?

A more open, clear dialogue between doctors and parents is imperative; we didn’t necessarily need numbers or odds or statistics but rather more real-life examples. If a ‘dysfunction’ includes things like speech language disorders or delays, a limp, a hearing aid or strong glasses, learning disabilities or autism spectrum disorders, doctors, counselors and parents need to be reminded that there are thousands of children who were not premature facing the same issues and who have a very good quality of life. While a severe impairment certainly represents a challenge for both children and parents, it is amazing how quickly families can adapt to a situation that an outsider might consider terribly difficult. Doctors should also emphasize that biology is not necessarily destiny, and that early, intensive intervention for preemies can have a dramatically positive effect on outcome.

And in the end, as Katharina Staub writes about preemies, ‘they bring joy to those who love them’. One day about four years ago, soon after the birth of our daughter, I was agonizing aloud about her very uncertain future. My husband said to me ‘she’s our child and we will love her no matter what’. He was right, she is our greatest happiness.

Thank you Rebecca, this is a very thoughtful post. I agree that neonatology is not an easy discipline. All families are different and finding the right words for each family is surely not an easy task.
You touch on many important aspects. What is an “impairment, a dysfunction”? Good question. To me that does not mean much in terms of our daily life with our children. We have challenges at times, we have overcome some and are working on others. Regardless, they are our children and we grow with them, they actually teach us not to take anything for granted.
I have seen amazing parents and extended families do incredible things for and with their children. They are learning along with them. That doesn’t mean it isn’t sometimes hard.
Intensive, early intervention does have a dramatically positive effect on “outcome”. Thanks Rebecca.

Thank you, Katharina Staub, for a well-written and thought provoking article. This quote from your article: “The statement does not once say what preterm babies and children can do, how they live happy lives and what they bring to their families and communities. There are many reasons to have hope and at the very least, not take all hope away from families when they are faced with difficult decisions.” illustrates so clearly the problems parents of trisomy 13 and 18 children (like me – I had a daughter with trisomy 18) or foetuses (if diagnosed prenatally) encounter. All the information we get is negative, with focus on early death and grave disability. We are thereby denied the opportunity to make an informed choice for our babies, the consequence being that most parents choose termination (if prenatally diagnosed), or comfort care only – and in many cases, like mine, are refused active and life-saving interventions for their child. All based on quality of life judgements that do not hold true. Families with children with trisomy 13 and 18 describe happy children who enrich their lives, in spite of their disabilities. Just as we see with the extremely preterm infants.
In my country (Norway), I am sad to say, I have colleagues who state that since a great numbers of the extremely premature babies will develop cognitive disabilities, we are wrong in trying to save them. The same goes for trisomy-babies. It makes me so sad, and it does lead to medical discrimination of premature babies and babies with trisomies.

Thank you for your comments. Families need unbiased information to make decisions in situations that they likely have never encountered before. These decisions remain part of the families’ life forever.